Diet

[GracieSimp]

Hi

Coujd I have dietary and exercise advice to avoid weight gain while on steroids

[PMRpro Ambassador]

It's fairly simple really: for most people cutting carbs drastically, in particular processed and "white" carbs helps them minimise weight gain while on pred. By white carbs we mean potatoes and other root veg, rice, pasta, even homemade breads. Fruit should also be limited - lots of sugar in fruit, it may be healthy but it is still a problem in excess.

Exercise: what you can manage while on pred without suffering payback the following day. Pred only manages the inflammation, it has cured nothing. The actual disease process continues in the background, attacking your muscles and making them intolerant of acute exercise. If you overdo it, you are likely to suffer delayed onset muscle soreness that will be worse than you expect and which can take much longer to resolve than usual. So intensive workouts and repetitive actions are not advisable. You will probably have to start with low intensity and build it up very slowly - and a good place to start otherwise is walking.

[GracieSimp]

Is there a cure of GCA or just steroids to manage the inflammation. If this is the case - surely this means one can NEVER come off the steroids ?

[PMRpro Ambassador in reply to GracieSimp]

No, no cure as such although there is a drug also used in RA that seems to get it into remission for about half of patients quite quickly - though whether that remission is only while the drug is being used or if it lasts for a significant time after stopping isn't yet known. For the other half it does seem to reduce the amount of pred required notably.

Luckily in most patients GCA and PMR both are what is called self-limiting, the underlying autoimmune disorder burns out and goes into remission in up to something like 5 years or so, sooner for some. There are several members of the community who stick around even though they have been off pred for several years in some cases.

[DorsetLady PMRGCAuk volunteer in reply to GracieSimp]

There is no cure as such. But both PMR and GCA are self limiting illnesses. The length either/both stay with you does vary from person to person - and there is little you can do to make it go away. You have to learn to live with it and manage it as best you can.

My GCA lasted a total of 5&half years, and that’s not unusual. I came off steroids in September 2016 - and there are other members on here who have also gone into remission.

It’s a long journey, but not necessarily a permanent one!

[bakingD]

Hi

I have kept my weight stable for a year whilst being on steroids by being really careful during the day, so a small breakfast, healthy lunch ie avocado, egg, salad, soups, a bit of fruit, not too much.Then for my evening meal I relax a bit and have a slightly larger meal with maybe some wholemeal rice or pasta, curries with lots of veg, cauliflower rice etc.I am always v hungry and find those Alpro mango yoghurts in a big pot useful for a sugar craving- they contain no added sugar or sweeteners.I also have lentil crackers with peanut butter for hungry moments in the day or a bit of hummus and cucumber /carrot

Am no angel and have the odd glass of wine and the odd pudding and weight myself daily- if have been a bit naughty over a weekend I cut back the next few days

My hba1c ( a marker of your blood sugars over the past 2-3 months) is normal and I intend to keep it that way

Hope that helps

[GracieSimp in reply to bakingD]

Thanks - it’s a bit depressing the long sounding journey on pred - no cure as such! Pred forever it sounds - aargh! I’ve reasonably healthy diet and walk for 40 mins 5/6 days a week plus a bit of Pilates a couple of times - so hope that helps to maintain my weight. Nothing I suppose can be done about my moon face if I get one - does everyone get the steroid face I wonder?

[bakingD in reply to GracieSimp]

No not everyone gets the Cushinoid moon face.Try not to worry.Just try not to put on loads of weight it's easier to move around more if you aren't carrying too much extra!Have the odd treat.At least our condition will hopefully burn itself out, there are much worse conditions!!I work as a cancer nurse and see a lot of suffering.

[GracieSimp in reply to bakingD]

I know you’re right - I had surgery for breast cancer 4 years ago and saw some sad, challenging battles - I want to say how wonderful the nurses like you were at the time. I had care that was over and beyond what I would have expected. I also had pneumonia- leaving me with bronchiectasisin that time and managed it all with less fuss than this / I’m a pretty ‘get on with it and get over myself’ person.But I’ve found this such a weird curve ball. It must be the steroids as I think along with the sleep deprivation are making me a bit depressed - this is from a normally very sociable, outgoing person - always busy and planning. I’ll just - as they say - keep on buggering on and reminding myself of just how poorly done people are and be grateful

. Thank you for your kind words.

[PMRpro Ambassador in reply to GracieSimp]

PMR is selflimiting for 95% of patients - that means that, at some point, it burns out and goes into remission. The median duration of treatment with pred is 5.9 years - and for many is shorter. PMR is a pain in the anatomy - but it doesn't kill and can be managed well with pred used properly.

I've been on pred 9+ years - PMR rarely stops me doing things I want to but gives me an excuse to say sod the dusting... And despite all that pred, while I am cuddly (always have been) I don't have any Cushingoid features now, not even a moonface.

[Blearyeyed in reply to GracieSimp]

Pred does not have to be forever , although it might seem like it at first when you look at the possibility of a few years on it.

PMR is self limiting , it can burn out and not return .

GCA is not cured , but like many autoimmune and autoinflammatory diseases can go into remission and stay that way , so think positive.

Steroids have weight gain among the non allergy based or life threatening side effects.

But really adding on some weight and not looking as good as you did , even for a few years , is a very small price to pay to live those few years without constant pain that prevents you moving let alone taking part in any form of life.

You can reduce weight gain by eating small portions more regularly during the day ( five small portions not three big ones) and choosing healthy snacks that are slow burning for those moments of steroid hunger.

Making a big pan of homemade vegetable soup is nutritious ( you can choose to make a stock from chicken or meat bones if you're not a vegetarian to add calcium , B vitamins and flavour) , you can have it for lunch , or if you feel peckish any time in the day just heat a cup in a microwave , it fills you up with few calories .

Eating gluten free helps alot of people preventing the bloating and stomach problems .

Reducing salt and processed food reduces impact on your kidneys and retaining water and joint swelling. Drinking more mineral water and green tea helps this too.

Taking processed sugars out of your diet and baking with Stevia or natural plant based sweeteners , using honey , vanilla or cinnamon for sweetening things like probiotic yoghurt ( which is good with fruit or oats and nuts ) for breakfast or with your Pred dose to protect your stomach. Jellies are good too.

Fruits are good but small portions during a day or with other foods ,

one way steroids affects your body and causes extra weight gain is by affecting your blood sugar / insulin balance.

Only eating more complex carbs is better for the same reason .

Small nut snacks are good in small amounts for nutrition and because they fill you longer .

Oats are good , actually a small bowl of porridge an hour before bed can help reduce insomnia.

Bananas are good to maintain bran function and reduce mood swings of depression because of the potassium , magnesium and B vitamins.

Garlic supplements can help maintain your heart and circulation while you are not always able to exercise regularly.

Honey ( best local, Manuka ) and ginger in drinks or smoothies can build up immunity.

Drinking a cup of green tea or cool mineral water before eating when you feel hungry reduces your appetite, that's because quite often your brain often confuses dehydration for need for food. It's not because you have filled your stomach a little before meals or snacks that makes you eat less , it's because the brain has what it actually needed , fluid.

It's more important to make sure you pack your meals with vitamins , minerals and protein than worry about your weight gain unless it's over 1 1/2 stone , or very rapid.

This will actually help keep weight gain lower but most importantly prevent the far more important side effects that can happen on steroids like calcium and Vitamin D deficiency that affect your bones.

It is also possible to rapidly lose weight on steroids , either a big quick jump in weight up or down should be discussed with a doctor as it could be another issue or side effect causing the change.

And , unless you are already extremely overweight and it impacts on your health and joints , or , have noticeably eaten more to cause more than a stone and a half gain , or, your weight is causing other health issues like diabetes, heart changes etc. you should not diet while recovering from a major inflammatory or autoimmune disease .

Why?

Because it will cause unnecessary stress on your body which can slow down your recovery , increase inflammation and cause more stress and pain.

Unfortunately , you need to accept some swelling and weight gain when suffering from these illnesses .

And accept that if you do need to diet or lose a few pounds because of medical advice it must be done slowly , discussed with a nutritionist or doctor, and , will take longer to loose ( or not move at all!) while still on your steroids.

Rule of thumb , eat healthy , take a good supplement , little and often and lots of fluids , and filling half your plate with vegetables , a third with your protein high food and the rest as carbohydrate should keep weight gain down.

Remember we may not all look better on steroids but we all feel better than we were without them , and it's what's inside that counts!

Be healthy , Bee xx

[FRnina]

got myself an anti-inflammatory cook book for change-of-diet inspiration. The hospital dietician here (France) gave me a meal schedule which specified carbs (if you must have them, have wholemeal) at either lunch or dinner: not both. Basically it's no sugar, low/no salt. I was hungry at high doses of pred- that's the difficulty- but now at low doses I don't have hunger pangs. I weighed myself once a week. I didn't put on weight- or at least not much. Now at 6.5 pred I'm even losing some weight (not too happy about that) but try to keep everything on an even keel: eating well, exercising. Actually meal preparation got a lot easier and simpler since having GCA/PMR. (still have a moon face but, according to my daughter, much much less- hardly noticeable in fact)

[FoCoLady]

I avoided inflammatory foods like sugar and foods with gluten. I really watched what I ate (for health and weight) because I was aware that many people on pred gain weight. I was on pred for a little over a year and actually lost weight. My skin and hair are improving now that I’ve been off pred for nearly 4 months.